5 tattoos for Radiation

Hello to everyone,



We came back from the hospital at about 2pm today with 5 new tattoos on Charmaine's body.



I was actually taken aback when I heard from the Radiation Oncologist yesterday about getting 5 permanent tattoos during the simulation session (which took place today). She explained that the tattoos are required for the technologist to line up the radiation beams for the upcoming 14 sessions of radiation that Charmaine has to go through.



We survived Day 1 yesterday without the kiddos' favourite Charlene jie jie.

Everyone woke up past 7am and managed to reach the hospital on time for our 10am appointment. Jase and Char were exceptionally sweet and I stocked our bag with food, knowing that they would be screaming out in hunger upon reaching MSKCC. Sure enough, just as we walked through the entrance and Charmaine already started screaming. Fed them their sausage and crabstick and everyone is happy! Brought the babies to the playground, to reward them after the consultation. Lunch and we were done for the day. That was the brief summary for yesterday.



Today is another early day at the hospital. She was scheduled for a checkup with the NB team at 0930hrs and for Radiation simulation at 1130hrs. I was a little worried about today because Charmaine has to be sedated for the simulation and hence she is not allowed to eat since midnight and she is really one feisty lion cub when she gets hungry. Sure enough, she was very upset this morning about being restricted with no food and drink. It is always not easy to calm her especially when she is hungry and hence I get rather stressed up every time she has to get a sedation and fast. [A rather amusing thing though about the hunger is that it pushes Charmaine to be even more co-operative than ever! I told her that we have 3 procedures to be done today and than we will go for lunch! So you can pretty much imagine her reaction when she gets a little fearful and I would mention "Quick, food after we are done!" and she would oblige swiftly whatever she is asked to do almost instantenously! I couldnt contain my smile seeing how adorable her reaction is.]



The thing about seeking treatment in MSKCC is that I always have to try to pre-empt what they need to do for the day. [I decided to put emla on Charmaine's port-a-cath today before going to MSKCC. Thank goodness I did! They said they needed to do blood tests and hence had to access the port! Not sure if its just me or rather MSKCC simply doesnt have a habit of informing or rather keeping within certain daily habits. Things are always so non-standardised and non routine] Another NB mommy in Singapore referred to it as having to start all over again. Strangely, while its indeed true that I am starting all over again in a new hospital, I have never really felt 'seasoned' anywhere. Not even in NUH or KKH. I assume I never will. Because life with a sickness thats here to stay is never a 'play that follows the script'. No doctors can tell me what the future holds for my little princess. And its so strangely true that the doctor here cant even tell me clearly how long the treatment will take.



The only thing we know for sure now is that Charmaine will be getting her first 3F8 infusion this coming Monday, 17th August. I am willing yet dreading for the day to come. I am going to face this day alone. Well, not entirely alone. I have Jase with me. As it is the first infusion, no one knows how she will react to it. But we all know that Monday will definitely be a long day for my babies and myself. As Charlene had mentioned earlier, I spoke to a couple of parents who offered words of advice: "Dont look at her straight in the eyes when it starts". "Its one of those few things that tear you apart totally but its worth it!" "Just focus on the road ahead". I am filling my head with almost all the most horrific thoughts , hoping that they will mentally prepare myself but I know I am most probably gonna be a nervous wreck on Monday. I have no idea how I am going to manage between taking care of Charmaine and watching over Jase but Monday will be here in a blink and given no options at all, I know I can only prepare as best as I can. [I dont know since when it started, but I must say that sometimes, no options is not a bad thing after all. When one has no options ahead of oneself, one can only walk through the only path ahead, willing or not, fearful or not. At least for me, this is pretty much my life in the last 6 months. No options and hence only just action to move forth.]



The next 3 weeks of our lives will probably be the toughest ever. And it looks like I am going to have to manage those 3 weeks on my own with my little ones.



A little technical bit for friends who wanna have a better idea of the treatment in the next 3 weeks.

17 Aug to 21 Aug - 3F8 infusion daily

24 Aug to 28 Aug - Twice daily Radiation

31 Aug to 1 Sep - Twice daily Radiation



Pain will be the most worrying for 3F8 treatment.

Hunger will be the most stressful for the 14 sessions of Radiation. [Because Charmaine has to be sedated for the Radiation and its twice daily, it means that she would not be able to eat everyday until almost evening for those 7 days. Even the Radiologist said that hunger will be tougher than the radiation itself. And its even tougher because I need to somehow feed Jase and yet not feed Charmaine. Frankly, I have NO IDEA how I am going to do it but I will sit on it for now because I have to face 3F8 first.



For now, I just have a little request, if its not too much to ask for.

Please continue to pray for our feisty princess Charmaine, especially so on Monday.

I will need all the luck and all the godly power available to survive Monday.



With this, I like to wish you and everyone in your family good health and happiness.

No matter what battle we all have to fight on Monday, we shall have a good time with our love ones before the fight begins...



Have a good weekend.



Love,

Cyn mommy